Autoimmune disorders

[Tiredcat]

I heard an interview on the radio today of Matt Richtel who has written a book called An Elegant Defense:The Extraordinary New Science of the Immune System. Towards the end of the interview he touched on why autoimmune disorders seem to be more common these days.One reason is that we are living longer, and that we are identifying the disorders more. But he noted that we are paying more respect to women's health issues.For many years women who complained of fatigue, fever, feeling unwell, were told they were 'hysterical'. They became the invisible women. Women have higher rates of autoimmune disorders. It is now believed that women have more powerful immune systems, which are more likely to attack the body as the system becomes out of balance with increasing age. So, he says, women are still suffering an invisible disorder, in which there is no known pathogen, because it is our own bodies that are attacking us.However there is now more likelihood that this will be recognised and understood.

I thought you might find this interesting.

[DorsetLady PMRGCAuk volunteer]

I think he’s preaching to the converted on here - but nice to hear our impressions confirmed!

Unfortunately women of a certain age have always been “invisible” to society in general!

[Hidden in reply to DorsetLady]

Yes, my sister said her gray hair made her invisible. 😕

[Hidden]

More reading for free.

theguardian.com/books/2019/...

[Tiredcat in reply to Hidden]

Yes, interesting, thanks Poopadoop. That's why the validation that comes from this forum is so important.

[Hidden in reply to Tiredcat]

Exactly so. I have said a few times recently that more time and money might come to PMR GCA and other "women of a certain age " illnesses. The recent NICE document on PMR lowered age to 40onwards and if course the pension age for women has risen. This means that women of working age might tip the balance. The government will have to address such illnesses more comprehensively in the future.

[jinasc in reply to Hidden]

That lowering of age, was fought for by two very strong women when they were Patient Representatives on the relevant committee. They conducted their own survey amongst the people who had PMR and as they both ran support groups, they won.

Followed on the 4 who sat on the GCA Committee...........and it will be in the new Guidelines when they are issued.

In August 2008 an International Press Release went out on a new Survey on PMR & GCA (issued by 5 women).

It is too long to reproduce here. so just one paragraph:

" Whilst these two diseases are not life threatening they absolutely destroy your quality of life. In addition, because these diseases mainly occur in women, the medical community at large has just not seen them as important.

Of these five women three are breadwinners, as are most women these days and need to work. It they cannot, they are put into the poverty trap for the rest of their lives. In some cases, victims of these two diseases live on state benefits and cost the NHS a fortune in medication, which relieves the symptoms, but does NOT cure the disease.".

Of those 5 women had joined with another 20 who met in London in March 2008 and the result was PMR GCA UK became a registered charity in England, Northern Ireland and Wales. Scotland already had a charity already. PMR & GCA uk North East Support another registered charity and the common aims are as published on their websites. 'Support Groups' being the first aim.

3 of those 5 are still active.

[Hidden in reply to jinasc]

Thanks for the background. I must say if I could have done a somersault I would have. It will mean a lot to the younger future members too. Please thank those patient representatives.💜

[jinasc in reply to Hidden]

I did and one of them 'takes no prisoners'. The other 4 are very diplomatic. 😉

Please No somersaults either, if your do damage to yourself, who replaces you on here?

[Hidden in reply to jinasc]

🤣🤣🤣 chance would be a fine thing.

[Yellowbluebell in reply to Hidden]

Make sure someones there with a camera as we would all like the chance for a laughx

[Hidden in reply to Yellowbluebell]

😂😂😂

[scats in reply to Hidden]

Some really scary facts there. No women were included in pain medecine trials until the 90s Wow!

If these victorian drs thought the most obvious difference between a man and a woman was the presence of a womb they were obviously very short sighted in more way than one!

[Hidden in reply to scats]

Yes. I am afraid most women their illnesses were see to come from the womb. I remember reading a book called The Female Malady in the 80s. Very scary history of the treatment of women with mental illness.

I was reading the other week that in terms of joint replacements there are none that are made using research on women's bodies. Because women's hips are physiologically different to men's, stresses are put on the replacement joint so they breakdown in a specific way and they put new stresses on the body too.

[scats in reply to Hidden]

I've had an anonymous discomfort in my hip since it was replaced but there's "nothing wrong", so that might explain it.

I was involved in biological research in the 70s. To think that medical research was so archaic at the same time leaves me speachless.

[Hidden in reply to scats]

Whoops re hip. Didn't remember you had one. It's a good example of the differences that still go on.

[Wenben in reply to Hidden]

That is interesting. In 2002 I was one of the first patients in Gloucestershire to undergo what was then a 'new'procedure called Birmingham hip resurfacing in both hips. Because of this I have been followed up more closely than with conventional hip surgery. At a recent routine check consultant was happy with hip X-rays and quite dismissive of the pain and discomfort I have had on right side for a number of years. With having osteoarthritis, PMR, and more recently spinal surgery it is a bit confusing. Whilst searching online recently I came across a piece which said they no longer use this type of implant IN WOMEN. I didn't fully understand the reasons but it was something to do with hormones which would seem to back up the lack of research as you mention.

[Hidden in reply to Wenben]

It's amazing how pain is so easily dismissed. I will try and find the hormone paper and have a read. Hopefully, they will start to take into account that women require a different technology. Meanwhile you can feel something isn't right.

[piglette in reply to Hidden]

When it is not your pain, you can forget it very easily, with a doctor, as soon as the patient shuts the door behind them!

[Hidden in reply to piglette]

Absolutely.

[Christophene in reply to scats]

In the Victorian days, women just had the "vapors" ; some mysterious mist that made women , well, mysterious. The snake oil men came around in wagons to sell Lydia Pinkam's Elixir, a mix of laudenum (opium) and alcohol. I bet they felt just fine. Imagine the days when cocaine was an ingredient in Coca Cola and was used instead of coffee in the American South to get going in the morning. That recipe was developed by a pharmacist no less.

[Hidden in reply to Christophene]

Charlotte Perkins Gilman's The Yellow Wallpaper, written in the late 19th century, was a novel about the way women with post partum depression were treated. It can be extrapolated to broader mental health issues.

[Hidden]

Hi tiredcat, was the interview on BBC or local radio?...just wondering if there's a podcast I could download.

[Marijo1951 in reply to Hidden]

I checked the BBC website and couldn't find it, then I checked where tiredcat lives and it's New Zealand. There is a YouTube video of Matt Richtel talking about his book here:

youtube.com/watch?v=yc4Ay6q...(Not working as expected?)

It's nearly 90 minutes long, so I'm going to listen later.

[Hidden in reply to Marijo1951]

Thanks...I didn't realise it wasn't UK. I shall have a watch when I recover from the dog's daily run.

[Marijo1951 in reply to Hidden]

'Run' - not a word in my vocabulary lately!

[Hidden in reply to Marijo1951]

Nor mine. I sit on a bench and throw the ball with a long ball thrower. She runs after it on land and water. It's over 20yrs since I could run. 🏃🏾‍♀️

[fmkkm]

Thanks for the link. You mentioned female hysteria. I am attaching a lengthy read on the history of female hysteria. It is long and rather chilling to read. Probably a lot of 19th and 20th century treatments for women’s health issues were influenced by these beliefs. Hopefully the 21st century will see more advances for PMR/GCA.

ncbi.nlm.nih.gov/pmc/articl...

[Singr]

Thank you for that. Very interesting.